Boylston business takes on mantle of scleroderma walk team

Saturday

May 10, 2014 at 6:00 AM

By Michael D. Kane BANNER EDITOR

WORCESTER — Among the 240 or so walkers who circled Indian Lake in Worcester on Sunday in the "Stepping Out to Cure Scleroderma" fundraiser walk was a local group of 20. Those 20 dancers were carrying on a Boylston-based tradition that pre-dates the walk's recent history.

While Stepping Out to Cure Scleroderma celebrated its 12th walk on Sunday, Viv's Team, named for former Boylston resident Vivian Killoran, took part in a predecessor event for four years prior. Killoran did not organize a team for this year's event, but she was in attendance as Viv's Team stepped forth under new direction from longtime family friend Jessica Bourque.

Bourque, who grew up in Boylston, is a lifelong friend of Killoran's daughter. As such, she's been walking with the family for 16 years. She is also the owner of Jazziak's Dance School.

"I've been doing this since I was nine or 10, but this is the first time I have taken the school," Bourque said. "We're doing it to keep her team going."

Killoran said she was first diagnosed with the little talked about autoimmune disease 30 years ago.

Officially known as systemic sclerosis, "scleroderma" literally translates to "hard skin," according to the Scleroderma Foundation's website.

It is a chronic and a progressive disease in which thickening and tightening of the skin can, in some cases, damage internal organs, such as lungs, the heart, kidneys, the esophagus and the gastrointestinal tract, leading to failure and death, the website states.

The disease affects about 300,000 people in the United States, roughly the same number as who suffer from multiple sclerosis.

"We want more people to know about it," Bourque said. "It is one of the less-known autoimmune diseases. Everyone knows about multiple sclerosis, but not as many people have heard about scleroderma."

This year, 20 dancers took part in the walk, which also requires them to raise money through pledges. In addition to the regular walk responsibilities, the walkers joined other Jazziak's dancers post-walk to provide entertainment and a tribute through a selection of dances.

"It's the first time they have had dancers. We thought it would be a nice touch," Bourque said.

Killoran also credited the Bancroft School for allowing the race to use its building and grounds, as well as providing student volunteers.

"I think it's wonderful that they allow us to use the facilities," she said. "It's a lot of work for the students, but every year they pull it all together and we've had successful walks."

In it's heyday, Viv's Team had over 40 walkers. Bourque said her goal is to bring even more dancers, along with their friends and families, to next year's walk.

Ultimately, she and Killoran say the goal is to raise awareness about the disease, which could lead to better treatments or a cure.

"The main reason we are carrying on is to spread awareness," Killoran said. "It is still not a very well-known diagnosis. This gives us the opportunity to spread awareness."

To learn more about scleroderma, or about the annual walk, or to find the local chapter of the Scleroderma Foundation, visit www.scleroderma.org.